Looking back, looking ahead…

So, y’all, it’s 2019. Not sure how… after all, I still remember when a credit card expiration of the year 2000 was wild. And no one would quite believe me when I used it to pay for something over the phone.

Looking back…

In 2018, I published 12 blog posts. They were spread out over the year on random dates, except for the four I published for #MEAwareness week (May 6-12). And two of them weren’t even mine, really, they were guest posts.

In 2018, I also participated in the greatest fight of my life. In February, almost three years after first filing for disability insurance, I had a hearing in front of a judge. I haven’t written about applying and the hearing before this, because it’s humiliating and inhumane. And demoralizing. And truly the hardest job I’ve ever had.

I never ever ever wanted to apply for disability. I wanted to continue doing all the things I’m good at. All the things I love. All the things that make me, well, me: marketing guru, writer, editor, artist, photographer, college instructor, mentor, singer, friend, etc. But it was all stolen from me by my illnesses. And I can no longer do any of it, not with any dependability or regularity, and not without severe pain and post-exertional malaise (PEM)☆. (So who does that make me now? I don’t know. But I guess that’s a subject for another post someday.)

On May 29, 2018, my lawyer called to tell me that my disability claim was denied. I lost my fight. There are many reasons why, which I won’t get into here (maybe someday, as a warning and to help others who have to apply), so I spent the next three months doing nothing but gathering medical records that hadn’t been previously submitted with my case and working on the appeal. (My lawyer told me today that appeals are taking an average of 12 to 15 months, if not longer. That means the earliest I could possibly hear a response is this September, but more likely, I won’t hear anything until March 2020.)

I’d rather scrub toilets than have to apply for disability. But I cannot. Scrubbing toilets would cripple me and keep me bedbound for weeks.

I want to give up, I so sorely do. But I’m not. I’m not giving up for myself, and I’m not giving up for the other patients with ME. (And if you have to apply for disability, this site, How to Get On, is awesome. Wish I’d known of it years ago, instead of after my hearing…)

The rest of 2018 is a blur. I know I saw many doctors and got a couple new diagnoses; that I found a new doctor who is awesome and knowledgeable; and that I did not file my medical records (and have to work on that now). I learned my adrenals are a giant mess, and that my body is in constant fight or flight mode. (My doctor said my results were “the worst he’s ever seen”.) I know I spent time on social media and talked to other patients, making friendships and connections, and that I shared funny memes and informative memes (such as the three above). I know I wrote some Amazon reviews for the invitation-only Vine program, and that my Amazon reviewer rank is currently 7,113. Woo-hoo! I went shopping in an actual store (maybe) twice.

I also know I didn’t go on a holiday. Anywhere. I didn’t go to any parties or attend a theater or concert performance, or even a movie. I missed Christmas and Thanksgiving dinner. I rarely saw family, much less friends. My life is so much smaller than it used to be.

But I’m still here. I’m still fighting, and I’m still advocating, even if it’s from my bed.

This tweet pretty much summarized what I want to say to you all (and to myself):

☆ (PEM means that any effort, no matter how small, can cause a severe increase [or flare] of my symptoms, and also cause me to crash. To wipe out. To be able to do nothing. Even writing this blog post will cause PEM. Even if I’m only working on it for 10 minutes at a time.)

Looking ahead…

Many people write New Years’ Resolutions. And they promptly ignore them. Some people chose a word for the year, and use that word to guide their actions.

I’m not doing either of those.

But I do have a few goals, which I am sharing here:

1. I plan to publish a blog post, hell or high water, on the 15th of each month. If I manage to publish one at another time during the month, that’s great. But something will get posted on the 15th. (And here’s January’s!)

That means I’m going to let go of perfectionism. (Or, um, at least try. I’m not doing so well on that front with this post, that I keep noodling over.) That means I’m going to stop being afraid of writing poorly, and I’m just going to write and share my thoughts and feelings and experiences, and continue to shine a light in the dark places.

And who knows? I might even publish an entry for the Insecure Writers Support Group blog hop that happens the first Wednesday of every month. I’ve participated in the past – I’ve written 10 posts about writing. And even though I don’t write much now, I still have thoughts on the subject – and lots of notes that I forgot all about. I might as well use them!

My first entry into the Gratitude Journal, 6/11/2014.

My first entry into the Gratitude Journal, 6/11/2014.

2. I’m going to consciously practice gratitude.

Sometime in 2014, I was in Target (back when I could still go shopping in a store without utterly wearing myself out and damaging my health), and I ran across this little (6.5″ x 5″), beautiful hardback Gratitude Journal, and as one does at Target, I impulsively bought it.

I used it a off and on over the past 4.5 years, and then, I stopped. (I’m not sure why.) When I ran across the book again, my last entry was dated 20 Jan 2018! Almost a year ago!

So, my goal this year is to write in it every single day, right before I go to bed. (And so far, I’ve been successful!)

And yeah, it’s hard some days to come up with enough items to fill the page (which is only 3 to 4 things), especially on very bad crash days when I’m exhausted and flat and crying and can’t even get out of bed. But I’m determined to remind myself of the good in every day, even if all seems bleak.

3. I’m going to practice aggressive self-care.

Lawks a mercy, but I do hate that term. “Self-Care” has such negative connotations, and is often associated with pampering yourself and spending money on yourself and going shopping or to the spa.

While I obviously don’t disparage anyone who does those things, they are not things I can do. (And doing them would actually cause PEM☆ and hurt me.)

What I can do is continue to learn how to live and do within what us patients call my “energy envelope“, or the amount of energy I have in any given day. (Which changes. All the time.) Instead of my old self’s tendency to do all.the.things., and to help out whenever I am asked, I am going to do less than I think I can in order to keep from exhausting myself and crashing.

I’m sure I’ve mentioned before, but it bears repeating: I can no longer multi-task. At. All. If I write this blog post, it means I can’t do anything else. I have to plan my days, and decide what I will focus on far in advance. In a few minutes, I have to leave for a doctor appointment, and that’s it. I’ll be done for the day. I’ll be unable to do anything else. And then I’ll have to spend time recovering from the effort, just as it took me weeks to recover from the hearing, and months to recover from putting together the appeal.

learningPart of self care is resting when I’m tired, and listening to my body. Part of it is not beating myself up when I’m not able to do the things I need and want to do. It’s being kind to myself. It’s celebrating what I accomplish, no matter how small, even if it’s just making it to the kitchen. It’s being gentle with myself, and not blaming myself for what is caused by my illnesses. (Have you ever noticed how terrible we talk to ourselves? We say things to ourselves we would never ever say to even people who probably deserve derision! Why do we do that? We must stop!!!)

Part of it is practicing ‘mindfulness’ and being calm. This is especially difficult for someone who has anxiety, and also a damaged adrenal system that is in constant fight-or-flight mode.

But I’m going to try to be compassionate to myself.

I’m going to continue to say no, and make my own health and well being a priority.

I’m going to continue to be kind, to myself and to others.

I am going to unapologetically, aggressively, take care of me.

What are your goals for 2019?


Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in four years, and I get no disability benefits – and my medications alone cost me over $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!

PS Anytime I try to link to the author of that tweet I quote above, in the tweet, WordPress goes haywire and deletes half my post. The author is Chronically Sarah, and it was posted 30 dec 2018.


At the suggestion of another #pwME who has difficulty reading, I have recorded two audio files of me reading this post in two parts. I apologize for the poor sound and my less-than-stellar voicing abilities these days, but I hope it helps someone. (PS if you have trouble playing it, please don’t ask me for help, and my apologies! It’s been difficult just to do this!) To play, click in the empty black bit on the far left of the audio image.

Part one:

 

Part two:

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #dSavannahDefects, advocacy, chronicillness, community, disability, dreams, hard work, health, illness, inspiration, learning, making a difference, perseverance, shining a light, the dark places. Bookmark the permalink.

8 Responses to Looking back, looking ahead…

  1. Liz says:

    Damn, what you could do if you were healthy! You show more courage fighting the ravages of ME/CFS than any healthy person ever dreamed of — you are an ME Olympian athlete. Keep talking, keep writing. This is good stuff.

    • dSavannah dSavannah says:

      I was definitely a force to be reckoned with before I got so sick. Many careers all at once… now… not so much. Takes me days to do what used to take me minutes. Fighting & advocating is hard, but it helps give me purpose. Thanks for reading! xox

  2. I get the PEM issue for weeks! I go to a tarantula show, and I can’t think about doing anything else for the rest of the month. I have to do nothing for weeks before heading off for a weekend to see my son, or going to DWCon or BTS. With my hip busted like this I can’t do a lot anyway, but every little detail of what I need to do has to be planned well in advance.

    There are those who think I can just get up and do things when I want to, and I’m sure you’ve run across people similar, but they don’t see the aftermath – the burnout, the exhaustion, even the throwing up from overdoing things. It’s absolutely rubbish, living how we have to, and in my case – as is the case with many others – disabilities and other chronic health conditions make it 100 times worse.

    Thank you for speaking out, and for carrying on the fight. You rock xxx

    • dSavannah dSavannah says:

      Yeah PEM is terrible. I was in bed all day yesterday, an utter lump of nothing, just from publishing the post Tuesday (when it was basically already written!). People don’t see our unfocused eyes or hear our labored breathing or how difficult it is to move, even a little, after any effort. And if I do something spontaneous, oh boy do I pay for it! The pain and exhaustion is even worse!

      Thanks for reading and supporting, my fellow warrior! xoxo

  3. Betsy says:

    Thanks for your post. Good goals….BUT don’t get down if your body will not let you reach them. Effort is what counts! Love ya BT

  4. “This is a post for everyone who didn’t let invisible illness take them down in 2018.” Love this! I can relate to many of your frustrations, especially PEM, and I also had a doctor tell me an adrenal test was the worst he’d seen! I so admire how you’re setting goals to stretch yourself, and keeping those goals reasonable so you don’t push yourself too hard. Yes to self care!

    • dSavannah dSavannah says:

      I hate that we’re twinsies on the adrenal thing! But at least we know we’re not alone! Thank you so much for stopping by and reading!

Whatcha think? Tell me, tell me!